Tag Archives: life choices

Our focus here at LiveKen is on living simple, sustainable and meaningful lives. As we begin this next stage in our life, we need to consider how we can continue to live by our values and become a sustainable family.

What is a Sustainable Family?

As we defined our values clearly, we need to define what we mean by a sustainable family before we can become one. A sustainable family may be something different for you than it is for me.

Even within a family, each person’s definition may be different. I am keen to minimise the impact we have on the environment. E is more interested in how we will manage physically and mentally as a family. Obviously, both of these are important aspects of sustainable living. However, sometimes an action that achieves one of these goals may clash with the other. As with any joint decision, it’s important to find balance. Compromises can allow everyone to be happy.

Having said that, here is my definition of a sustainable family:

A sustainable family is one that minimises their negative impact on the environment, while building strong community ties and maintaining their mental, physical and financial health.

For us this has meant:

agreeing that we will try the ‘environmentally friendly or sustainable’ options but will stop if they negatively impact my health in any way. An example of this is cloth nappies. We are starting with them, but if we find it’s too much work we’ll look at alternatives.

taking time for ourselves before the baby arrives to go out for a nice meal, a movie, or some other event.

accepting hand-me-downs or buying things secondhand.

asking for gift vouchers for a nappy wash service if people want to get us gifts. This allows us to minimise the impact of using cloth during the early weeks when I’m recovering.

It’s my birthday and I’ve finally found some time to write!

As you’ve probably guessed I haven’t found the time and energy to write regular posts for the blog during this pregnancy. As I mentioned in my last post, where I announced the pregnancy, I want to discuss what this pregnancy has been like for me. Starting with the first trimester, I’ll do a summary post for each section of this pregnancy.

Before I was pregnant…

As my regular readers would know, I’ve been living with Fibromyalgia and Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) (ME/CFS) for at least the last 4 years. I say at least the last 4 years, as that’s when it began to impact my life significantly. It got to the point that I stopped working and studying full time, and basically had no social life for a year or two.

During those first few years I spent a lot of time with doctors and specialists trying to get a diagnosis and working out what treatments and strategies worked (and didn’t work) for me in terms of managing the conditions.

Last year, I finally reached a point where many of my specialists were saying I was as well as I was going to get and that if we did want to start a family it was time to consider trying. After much discussion and research we decided that the potential risks were worth it and so we decided to start trying.

As a result, I stopped all my prescription medications (apart from seretide and ventolin for my asthma) and began focusing on other coping mechanisms.

The First Trimester…

Everything happened very quickly once we’d made a decision and I think both E and I were in shock to start with that it was all actually happening.

The research that we had done indicated that, for both the Fibromyalgia and the ME/CFS, a third of people feel worse during pregnancy, a third stay the same and a third improve. One of our biggest concerns was that I would be in the third that felt worse.

Thankfully that hasn’t been the case.

In fact, even though I suffered from bad morning sickness from before I even found out I was pregnant, my pain and energy levels actually improved during the first trimester. Enough that when we went on holidays to Queensland I was able to enjoy the trip a lot more than I thought I would.

Yes, I still had to rest daily and we had a couple of ‘do nothing’ days but I also managed to swim on the Great Barrier Reef and participate in a walk in the Daintree Rainforest.

Towards the end of the first trimester, my chronic illness symptoms settled back to what I consider to be ‘normal’ levels for me.

First Trimester Symptoms…

My main symptoms during the first trimester were:

constant nausea and ravenously hungry at the same time for the first 7 weeks

Increased energy for the first 7 weeks (less need for naps during the day)

Morning Sickness (vomiting started at 8 weeks and lasted through to 17/18 weeks)

Cramping

Decrease in general Fibromyalgia pain levels

First Trimester Management Techniques…

As I didn’t have too many symptoms, I didn’t need to change much in the way I was managing my health.

It was important that, although I had decreased pain and increased energy for those first few weeks, I continued to pace myself and not let myself get too run down.

When pain levels got uncomfortable my go to treatment options, which were all in place prior to the pregnancy, included:

The last few weeks of the first trimester, and heading into the second trimester, got more difficult to manage as the morning sickness and fatigue got worse. Those weeks were spent mostly resting to avoid any major crashes.

Overall, the first trimester went well. I coped reasonably well with the new pregnancy symptoms because pain and fatigue had improved.

I avoided posting on the blog during this time, mainly because I didn’t want to announce yet and I was worried I’d say something that would give it away!

Postnote:

Before I take a break to settle into being a new mum I thought I’d make an effort to write a few posts and schedule them over the next few months, so hopefully my posts will be a bit more regular than they have been so far this year.

Just be aware that I might not reply to comments regularly from July as I think I’ll have my hands full for a while.

You may have noticed I’ve been missing in action lately. There is a very good reason for this and it’s time to make an announcement… Life has taken a major turn in the last 6 months.

Not only did we launch the Foggy Frog and the Pain Gang picture book in September last year, and help to organise and host a national conference in Adelaide in October, but on a more personal level E and I are expecting a baby! Due date 6 July 2017.

Yes, you read that right! We’re over half way to meeting this much awaited new addition to our family.

Why has it taken me so long to make this announcement?

Simple. I wanted to tell as many people in person as we could before I announced online. If I do know you offline and haven’t had the chance to tell you in person yet, I apologise. I’ve tried my hardest to see as many people as I could over the last few months but I felt that I couldn’t really hold off much longer with making this announcement as I’d been avoiding blogging until I was ready to announce.

Pregnancy, Parenting and Chronic Illness

Those of you who have been following me for a while, or who know me in real life, know how important the idea of being a parent is to me. You would also know how much thought, research and discussion has gone into the process of deciding whether or not to try for a baby. We obviously made the decision to try, but it was not an easy decision to make.

Living with several chronic illnesses has limited what I’ve been capable of achieving over the past few years. I’ve very slowly built up my work hours and my capacity to exercise and participate in social activities to a point where I felt comfortable coping with whatever impact being pregnant and being a parent may have on my health.

I know that it’s not going to be an easy process but it’s something that is important enough to me that I’m willing to modify what I do to make this work.

Over the next few weeks I’m hoping to begin a series of posts that talk about what it’s been like so far being pregnant with fibromyalgia and chronic fatigue syndrome. While reading these posts please remember that I’m sharing my personal experiences in the hope they’ll help others.

What I experience may not be the same as what you experience. In fact, the research I did before becoming pregnant showed that people’s bodies react in very different ways to being pregnant with these conditions. There’s no way to know how it would impact you in advance. All you can do is have strategies in place for coping with the wide variety of possible outcomes.

Anyway, enough of me talking for now… I’m just so excited to finally be sharing the news. We’re going to be parents!!!

A Quick No Buy Challenge Update then on to Family Planning: Although I was tempted by some of the clearance sales in town (hello fluffy warm down jacket) I did not make any purchases this week that weren’t experience related and shared with those that are important to me. I had lunch with my sister while she was in town (over from Hong Kong for a wedding) and E and I spent a wonderful morning out at the zoo for a behind the scenes tour and breakfast on Sunday.

And now for the post… (Apologies this is quite a long one for me!)

Those of you who know me in real life, and those who have been following my blog for quite a while, know that the ONE thing I really REALLY want from my life is to be a mum.

Unfortunately, around the time E and I were finally having serious discussions about potentially starting a family in the next year or two I had my first major crash.

Almost 3 years later and we’re just beginning to start having serious discussions again, but this time my health is the major road block.

Starting these conversations have been difficult this time around. E has not really wanted to talk about it because he feels like he has to be the bad guy saying No when he knows it’s something that I really want. He has wanted to wait until I was physically capable before we had the hard conversations but I think I’ve now made him realise that not talking about it has been hurting me more than having honest conversations.

Being a scientist at heart he really needs us to have logical and rational conversations about how this will all work and he struggles when I get overly emotional during the conversations.

So… where have we got to?

We have agreed that I need to set some goals to get to a point where I feel confident that I can physically cope with the pregnancy and the uncertainties that come with raising a child.

The goals I have set myself are as follows:

I believe that I would be physically capable of handling the stresses and uncertainties of pregnancy and raising a child if I can achieve the following and maintain it for at least 2-3 months with no major crashes/flare ups:

An average step count of around 7,000

The following average breakdown of activities

Less than 30% Rest/Mindless Activity – on average around 25% (meditation, naps, audiobooks, tv, Facebook, and travel when E is driving)

What I’d like to do is get your input. If you have had children of your own while dealing with chronic illness like Fibromyalgia or ME/CFS, how did you cope?

Even if you don’t have a chronic illness, do you have any tips for minimising the impact of flares?

Here are my thoughts so far:

What will happen if I’m having a crash?

Flares and crashes are part of the parcel with many chronic illnesses so it’s important to have some sort of system in place for dealing with them. The first 5 years will be the most difficult to cope with as the child will be too young to actually understand what’s wrong when mummy needs to go lie down and isn’t able to do all the things they want to do.

Depending on the severity and duration of a crash/flare up there are several things that I can do to make sure I’m not neglecting my child during this time…

Be realistic about what is really essential to be a ‘good parent’. A young child doesn’t necessary understand what is going on but they are aware of if their parents are there for them or not. Realistically, the occasional day of ‘low energy activities’ is not going to be detrimental to my child’s health and mental well being as long as I’m with it enough to be there with them.

Have stand by ‘Low Energy Activities’ available. This could mean a day in bed reading stories, watching tv/movies, or listening to music. It could mean allowing my child to have free play time while I observe from the couch.

Have family support available on call if needed. At this point in time we are very lucky to have a large network of family support with reasonably flexible schedules. E’s Amma and Uppa, his parents, and my Gran are retired, my mum works part time, and my dad has a fairly flexible schedule. Obviously, they still have things that they do regularly and tend to fill up their schedules with other activities but between them all I’m fairly confident I could find someone at short notice who could help me out.

Do my best to minimise the chances of a crash/flare up occurring. Obviously prevention is better than treatment, so having systems in place to minimise the likelihood of a flare is important. The ideas I’ve come up with (or found while researching this topic) are:

With a new born, rest when ever the baby sleeps. During the first 4-8 weeks focus only on what is necessary – feeding, cleaning and resting with the baby. If possible, have support come in to do other tasks like cleaning, cooking, etc. (We already have a cleaner coming in once a fortnight, and – because I’m keen to use cloth for health and environmental reasons – I’d consider a nappy service for at least the first while).

As the child grows, continue to pace your activities. Consider having regular days/times where the child is in someone else’s care (family, child care) so that you can still have regular rest breaks.

Consider using a combination of breast and bottle feeding so that others can assist. This would be particularly useful for night feeds so that I can still get reasonable sleep. The impact of sleep deprivation on my health is one of our primary concerns at the moment.

How will I cope with the day to day activities of raising a…

Newborn?

From what I’ve read, the newborn stage (apart from the sleep deprivation) is relatively simple to cope with. As your baby is not yet mobile it is easy to do low energy activities with them. Most of your time would be spent just feeding, cleaning (nappy changes, etc) and cuddling your new little bundle.

As stated above, I’d consider having support services in place for cleaning, etc.

The verdict on breastfeeding vs bottle feeding for those with chronic illness is still out. Breastfeeding is simpler in that you don’t need to worry about sterilising bottles, making sure the formula is at the correct temperature, or just using up your energy in making up the formula. However, it uses much more energy to breastfeed and can leave you physically more tired (something that a person with chronic fatigue doesn’t really need) and you can’t share the task of feeding the baby.

Personally I’d still like to breastfeed, at least for the first few weeks if possible, but would be open to pumping and supplementing with formula so that E and others could help with feeds after the first few weeks.

To make breastfeeding (especially at night) as easy as possible in the beginning I would like my child to sleep next to me. However, due to my pain levels I tend to toss and turn at night and E is a very heavy sleeper so I wouldn’t want my child in the bed with us. I’d look at getting something like the arm’s reach co-sleeper which converts from a co-sleeper bassinet to a free-standing bassinet to a ‘read to me’ love seat. I’m interested in getting items that will have longevity in terms of usefulness and style.

As I mentioned above, my passion for sustainability and my own experience with disposable items near my nether regions (I’m allergic to disposable pads, etc) mean I’m keen to use cloth nappies on my child. I have done a lot of research on this topic and feel that it is doable even with limited energy and physical capabilities. With a young child you will already be increasing your washing requirements to keep their clothes clean, it doesn’t add that much to throw in a load of nappies every 2 days or so. It’s even easier if you use a nappy service that collects the dirty nappies once a week and washes and returns them.

Crawler/Toddler?

This in when I think things will start to get interesting. At this point in time I believe I’d be considering putting my child into some form of care (family members or child care) 1-2 days/half days a week so that I had some ability of pacing and having some more intensive rest.

I’d also consider going to spend days at other people’s houses (or have people over to visit) so that I have some support during the day.

Older Child?

As my child gets older I’d explain to them in age appropriate wayshow my illness impacts our life and why I need rest periods.

Well, I’m starting to run out of steam and I have gone on for quite a while so I’ll leave it here for now (stay tuned for more as I continue to consider our options)…

Read More…

There are plenty of articles out there on this topic but here are just a few

We’re quickly approaching the half way point in our 20 Week No Buy Challenge and so far there haven’t been too many difficult decisions I’ve needed to make.

Over the last week in fact, I’ve given away a lot more items then we’ve had come into the house which feels great. On the weekend Rach (who’s doing this challenge with me) brought over a top she no longer needed/wanted. It fits with my colour scheme (greens and pinks) and is made of cotton so we traded. In exchange for the top I gave her some material to use in her conversion of one of her dresses to a skirt.

On the same day I also had one of my other friends over and let her go through the big bag of clothes I had taken out of my wardrobe over the last few months. Most of the clothes were things I’d either not worn in over 12 months or I’d gotten something that does the same job (little black dress for example) but fit better with my wardrobe guidelines (the new little black dress is cotton and has pockets). From this process, Janelle (my friend), received a few short sleeved shirts for work and a couple of dresses and a beautiful leather bag with matching belt. She described it as:

“shopping without actually spending money”

E has mentioned that he thinks I’m getting a bit obsessive with the decluttering but I don’t see it that way. Yes, the process seems to have some level of inbuilt momentum… the more I do it, the more I want to reduce… but I’m not thinking about it 24/7 like I tend to do when I get obsessed with a topic.

I’ve seen so many great benefits from reducing the amount of stuff I own. I have always struggled with keeping the house clean and often became overwhelmed by tasks that need doing but lately that’s started to change. Now that most things have a home, and one that isn’t stuffed so full it’s difficult to fit everything in, it’s generally very easy for me to put things away as soon as they’ve been used. This means keeping the house clean is much easier. I find that my stress levels are much lower now that there are generally clear shelves and counter tops. I know what I own and I’m not tempted as often by impulse purchases.

Have you been on a decluttering journey? What benefits have you found?

Today I’m seeing my doctor to follow up on the side effects and blood test results. I’m feeling very frustrated with myself lately. Thanks to the side effects I’ve been struggling to do any work, even writing these Share Your World posts is taking me many times longer than normal.

Share Your World: Week 3

What is your favorite piece of art? (it doesn’t have to be famous)

I don’t really have an answer for this one as I tend to favour art work that has special meaning to me or that evoke emotion in me and there are several that fit that category. Looking around our house at the moment there are two that stand out to me…

The first professional photo of me and E. This photo was taken almost 10 years ago. Every time I look at it, it makes me smile and feel good inside.

This painting was a birthday present to me and E on our 30th birthday last year. It was painted by one of our friends and I love how simple it is. It hangs in our toilet and adds a point of interest to an otherwise boring room.

What made you smile today?

Watching the cats chase each other around the house. Cats can be very entertaining and also great therapy. When I’m feeling my worse and spend my time curled on the couch I love having them come and curl up with me.

Which place do you recommend as a Must-See? Please state which country, state or providence.

My Aunty lives on this wonderful island in the middle of the Hawkesbury River. It’s home to a few hundred locals while others have holiday homes on the island. Apart from the communal vehicles for maintenance and emergency services there are no cars on the island and you can only access it by ferry.

I love how peaceful it is on the island and the fact that there is such a communal feel.

Complete this sentence: When I was younger I used to….

hide in cupboards with my sister.

Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?

I was grateful for the opportunity to float in the ocean and spend time with family and friends. I’m hoping to make more beach trips this summer, especially given the fact that I’m meant to be doing more water based exercises at the moment.

I’m also grateful for having rediscovered my meditation mantra from last year, it’s been very helpful to me while I’m dealing with the extra symptoms and side effects.

May I/you be peaceful and true

May I/you have an open heart and open mind

May I/you be free from all suffering

This week I’m looking forward to getting some answers from my GP and taking the time to focus on recovering from the last weekend.

Another successful week for the No Buy Challenge. I’ve been so busy dealing with health related activities and issues that I haven’t had a chance to do any shopping at all. 🙂

There were a few things I was tempted by, but I managed to either find alternatives or get past the temptation.

On Sunday we spent the afternoon down at the beach. We went for a swim, I floated in the water, and then went to a friends birthday/promotion party in the surf club. It was a wonderful afternoon, but as you’d expect it was way too much for me in one day. I’m still dealing with PEM (Post Exertional Malaise) today and it’ll probably take another day or two at least to get back to my ‘normal’.

Warning: The rest of this post may be TMI (Too much information) for those who know me closely, read on at your own discretion….

Set up for a day on the couch… Water and tea, tablet and headphones, tv controller…

As I mentioned last week I’ve been trialling Cymbalta (only at 10 mg a day) at the recommendation of my Pelvic Pain Specialist. It’s now been just over a week since I started it and I’ve been struggling with quite a few side effects even though I’m on such a low dose!

Of the common side effects I’ve been dealing with dizziness, drowsiness, dry mouth, low energy, and nausea (to the point of feeling like throwing up).

In addition to that:

I’ve felt like there are little electric shocks going all the way through my body and causing me to be very light headed and shaky.

High levels of pain down the inside of my limbs (especially my left leg).

Painful, tingly breasts with milky discharge from both. This is listed as a RARE side effect on WebMD but it came as a big surprise to me.

I’ve got an appointment with my GP on Thursday to get the results to the blood tests taken last week and will be asking his opinion. At this point I’m going to give the drug at least another week but I’m not sure if it’s worth continuing long term with this drug, it has reduced the general aching but there are so many other pains and side effects that I’m not sure it’s worth it.

Have you had any strange or rare side effects from any medications you’ve tried?

How long do you give drugs before you decide if they’re working or not?

Over the last week I’ve done well with the No Buy Challenge and haven’t spent any money (on myself – my husband and I bought a few things together for the house but that is outside of my challenge as I’m doing this as an individual challenge).

There were a few times when I felt the urge to go shopping (especially for junk food when my energy levels were very low) but I managed to avoid that.

How?

I found other things to focus my time on.

I did more decluttering and now have a pile of things I want to give away. I’ve put together a few presents for people I know I will be needing presents for in the next few months and I’ve asked a friend over to go through the rest of the stuff before I donate it to charity.

I played games with my husband… we’re playing through the Lord of the Rings card game at the moment.

I napped… My energy levels have been very low, especially over the weekend, so I’ve spent a lot of time napping.

I worked… I had a meeting during the week and worked on the Foggy Frog and the Pain Gang picture book. I also went for a walk with my mum to check out one of the sites for the Biodiversity trails I’m developing.

I read and wrote… I spent time reading blog posts each day as well as writing my own posts.

I meditated… I have an app on my phone that has a lot of guided meditations. One of the things I’m doing in my aim to balance this year is to do at least 2 guided meditations a day… one on waking and one at bed time… most days I’m also doing one mid-day as well. Each is between 3 – 13 minutes long.

These activities were not only to distract me from buying but (probably more importantly) distracting me from the pain I live with on a daily basis. For the last 3 months my pain levels have been slightly higher than average so it has been important for me to find ways to distract myself from it.

What do you do to distract yourself? – from pain, from impulse shopping, from anything…

During that time we’ve had lots of time with family and friends celebrating Christmas and the New Year. This kept purchasing to a minimum but there were Boxing Day Sales (and Closing Down Sales) in a few places that we checked out.

At one of these sales I picked up a new washing basket (ours was falling to pieces) and a wicker basket for my bike… Although I haven’t used my normal bike in a while because of my health, we’re planning to get me an electric bike in the next few months and the basket will allow me to carry around the things I need without getting hot and sticky with a bag on my back. (It’s also something i’ve always wanted – a nice wicker basket on my bike).

It slips off easily to be carried when you reach your destination. The only reason I got it now (before the bike) is the shop was closing down and it was over 50% off.

So, as you’ve probably guessed by now the basket (and the new bike to come soon) were not on my original exemption list but have been on my to purchase list for a few years now.

Just to reiterate (for myself, as well as for you), my rules were:

Things I will not be buying:

Clothing – exceptions will be made if something I have only one of (e.g. leggings) completely die. Otherwise, make do with what I have.

Shoes and accessories (this should be easy, I haven’t bought anything new in this category for quite a while and have only just received a new pair of earrings from my husband as an anniversary gift).

Junk food (this will be a struggle for me, although not often I do find when I’m feeling at my worse I do tend to grab some apricot slices or chocolate).

Eating out or takeaway alone. I will still eat out with family and friends but try to make each outing meaningful and when I’m eating alone I will make my own food or eat leftovers from home.

Other Non-essentials – toys, games, fancy new gadgets… (I’m sure I’ll be tempted by some things but can’t think of them right now, so that’s what this category is meant to be covering).

Things I will still be buying:

Necessities – groceries, house related bills, etc.

Gifts for others – my focus will be on making sure gifts fit with Elena’s 5H Code of Holiday Giving. Where possible I will make gifts at home, if this isn’t possible I will aim for gifts to be at least 2 of the following – Handmade, Healthy, Helpful and from Here (local) – and will focus on experiences.

Experiences and events that fit with my values.

Work related expenses.

Things that have been on my to-buy list for over a year (especially if they come up on special)*

During this time of celebration and busyness, don’t forget to look after yourself. I know that, for our family at least, it is definitely a very busy few days and so over the last few years I’ve had to learn a few ways to manage this.

Don’t forget to pace yourself. For me, this means no more than one or two social events each day (if 2, then one has to be a very low energy event) but even this is much more than I normally do so I’ve decided that I’m going to take a break from here until the new year.

2015 in review

Over the last year I haven’t done as much posting as I have in previous years, it has been the year of Enough. This has meant focusing on getting life more balanced and accepting what I have and what I can do, not what I don’t have and can’t do.

Two of these were written in previous years but are still quite popular today.

During the last year I have begun working again (even if only a small amount each week) and it’s been nice to be bringing in some income of my own. I’ve also been working with my husband and close friends to get the Foggy Frog picture book finalised (we should be ready to publish early in the new year).

I haven’t yet taken the time to sit down and reflect properly on everything that has been achieved this year or what I’m hoping to achieve in the new year and that is another reason why I’m planning to take the next week off. When I get back I will hopefully be able to outline better what it is I’m hoping to achieve in the next 12 months.

In regards to our 20 week no buy challenge, I don’t believe I’ll have any troubles with temptation as I’ll be focusing on my health and socialising for the next week or so but I’ll report on weeks 4 and 5 in the new year.

Merry Christmas and Happy New Year.

I hope you all manage to find at least something small to be grateful for and to bring joy to you holidays.

I'm the author of Foggy Frog and the Pain Gang.
Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Pelvic Congestion Syndrome in 2013. I'm currently trying to find a lifestyle that reduces the symptoms from these conditions and allows me to live a fulfilling life.
I'm passionate about sustainability, mindfulness, and simplified living, and I love being outdoors, yoga, walking, drawing, sewing and baking.